Wednesday, December 21, 2011

Holiday Card Letters

Yeah, so I do not do them. Never have. I feel like I would be lying if I told everyone about all the wonderful things about life and left out the icky parts that consume us a ginormous part of the time. Yes, I am very blessed to have 3 beautiful children, a loving husband and a home over our head, but there are lots of little things that "add up" that seem to be overwhelming. If I were to write a letter it would go something like this:

Greetings from the R family:

This year has been an interesting roller coaster ride to say the least.(as usual for the last 4 years) We feel very blessed to have each other and to be alive! At this time of the year in Maine you would expect snow, but this year we got it for Halloween and Thanksgiving. I guess God is trying to shake things up a little. Now on to what everyone is up to.

S: He is still working at the same job for almost 12 years. He also has a second job to keep up with our health care expenses.  He almost left, but then his boss decided he wants to throw people with mental illness and developmental disabilities out on the streets so we decided it was wise for him to keep that job for now. In his spare time..................oh wait, there is no spare time. He works 70-80 hours a week at 2 jobs so we can keep a roof over our heads. When he gets a chance he helps out with the kids and is very good at trash duty every Tuesday morning. He is quite grumpy because of the awake overnight shifts, but manages to stay awake on Sundays so he can watch the Patriots play. We managed to both make it to Sam's gingerbread making party today.

Me: Hot mess. I stay up way too late so I can get some quiet time. That is when I watch my inappropriate trashy tv that little eyes should not see. Right now I consider my job to be case manager and/or the executive advocate for my kids. I have not had to go into the school to advocate for Kailyn yet, but get called or texts multiple times a day to deal with Type 1 Diabetes issues sometimes. No one scares/intimidates me anymore. I once was scared of speaking my voice, but now I say everything on my mind and make sure that things are being done right.  If things get bad enough there is always home schooling. I have gone into school for Sam a few times and even tracked down the Principal to set things straight. I deal with juggling Dr. appts. including, but not limited to; Developmental Pediatricians, Regular Pediatricians, Pediatric Surgeons, Pediatric GI Doctors, Pediatric Endocrinologists, Pediatric Neurologists, Pediatric Epileptimologists, Pediatric Pulmonologists , Social Workers, Physical Therapists, Speech Therapists, Developmental Therapists and Occupational Therapists.  I volunteer at the school when I can, joined the schools PIE group (PTA), bring my kids to soccer, volleyball, band, kids clubs, basketball, dance class etc.... Luckily we live close to everything so the mileage is not bad if any at all. (I can walk to the kids school)  Grammie is also very willing to help with the car pooling. I don't like to bring Keira out too much because I fear her getting something that might set off seizures. In my spare time (cough cough) I sit on the couch and think about all the things I should be doing, but get overwhelmed so I do nothing at all. I play games on my phone, chat on twitter or the phone. Forget about out.... Oh, I almost forgot. I also had pneumonia this summer and suffered my second PE. Thankfully I did not die. 1 in 3 people do. Luckily I have been spared twice and now I am on blood thinners for life because of a genetic blood clotting disorder. I get to go to my MD and get my levels checked every 1-2 weeks. I hope to start working on getting my pre-pregnancy body back soon!

Kailyn: She is doing really well this year. Her anxiety levels are way down. She has joined Band and does  Tumbling, Hip Hop and Ballet classes. She also enjoyed Cheerleading for the Gorham Grizzlies.  She is doing well socially. Seems to have a great group of friends even though most of her old friends went to new schools. We have had a hard time keeping her Diabetes under control, but managed to get her back down to levels so that she won't go blind by the age of 20. (one of many complications)  I worry daily about her. I have been hearing a lot of stories about children dying from T1D lately. I should not read them, but can't help myself. I want to know why so I can prevent it from happening to K.  She is a very happy and helpful girl when her blood sugars are not high or low and is growing into such a beautiful girl.

Sam: He is the one I worry the least about. Sam loves to try every sport thrown at him. Soccer, Volleyball, Football, Basketball. He particularly LOVES football and wants to play tackle football next year.  He still has High Functioning Autism, but is managing to make his way in this world. He is doing things well beyond we ever hoped or dreamed when we were given his diagnosis 4 years ago. (the first devastating blow to our family that would start a domino effect for 4 years and counting.) He was not talking at 3 and was diagnosed with Classic Autism at the time. You would never know it unless you spent a good amount of time with him. Academically he is catching up. He is at grade level in Math and does not get Title 1 support for that anymore and is at grade level for Reading, but still receives support due to his anxiety. Especially around test taking.  He still thrives on routine and has his issues, but nothing that we can not deal with.

Keira: Our little trouble maker. I think I say "get down" 300 times a day right now. A year ago now I wondered if she would ever walk. She is a completely different child than then, when she was diagnosed with Failure to Thrive. Now she is climbing up a storm. I wish we could afford a jungle gym for the basement. She was diagnosed with Autism Spectrum Disorder and we are waiting to see if we can get the ABA we want for her and know that she needs. She is not learning to talk and still has her g-tube. We had to put her back on seizure medication because the Myoclonic seizures came back after over a year of being gone. We are not sure if it is due to trying to wean the G-tube feeds so those are back again. I don't care if she has it forever as long as she can talk and function. When she was having the seizures she was not uttering a word. (Usually gibber jabbering)  Our hope is for her to be where Sam is in four years. Early Intervention is the key and I am advocating for it tirelessly.  Besides being a trouble maker she is a ton of fun. Loves to run around nakey and hang with her brother and sister. Dancing and singing are major favorite past times. Twinkle Twinkle Little Star and Itsy Bitsy Spider being the top two. Reading and looking at books are fun too!!

So there you have it. As bad as it sounds, I guess things could be/get worse? I do have woe is me days, (getting far and few between). I think I am getting used to our new normal of craziness.  I have given up the dreams of a perfect ideal family, because there is no such thing. I don't care if my house is messy. (I don't like dirty though) I don't care about gourmet meals. I care about my children and husband. If every ones needs are met at the end of the day then it is a good day. THAT is actually a perfect day.

Hope you have a Merry Christmas and A Happy New Year!!! ;)

Disclaimer: This letter is totally sarcastic, but almost reality. At least ours. There is much more to our life, but like all good sticky sweet la la la our life is wonderful letters, I had to keep this a bit short. lol

Thursday, February 10, 2011

Sam's "A Time For Love" Kindergarten concert

 Sam was very excited about his "musical" as he called it. He has watched his sister do these things for 4 years and now he was finally getting a turn. He kept saying that only Mom's and Dad's can come and he  expected us to both be there. Keira came with us and did great. It was much different watching him than Kailyn. She always looks at us with smiles and  waves. He was all business and barely looked our way. He was taking in the scenery.  We are both very proud of his tambourine duet and his ability to sing all of the songs. The entire pm Kindergarten did a great job.
There's my Mommy, Daddy and Keira!

All of them got to wave to us before they started to sing, dance
and play instruments.

Singing away!

Sam playing his tambourine duet.

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Monday, February 7, 2011

Do you think Sam Loves Me?

He wrote (scribbled) this song for me. I think it is cute and will be using it as blackmail when he gets older. ;)

Sunday, February 6, 2011

WANTED: Trader Joe's Whoopie Pie Thief!!!

Approximately 15 months old, 23.4 pounds, 2 1/2 feet tall, light brown curly hair, big blue eyes and kissable cheeks.

Last seen with shirt off (trying to hide the evidence). In white onsie (with whoopie pie remnants) and blue jeans. Gangster gear.
Don't let the big blue eyes and curls fool you.
She will fiercely and swiftly crawl right over you to get to whatever she wants.
She also enjoys white bread with butter, Trader Joe's O's, juicy juice apple juice and 3 bolused 8 oz cans of pediasure a day. (Down from 4)

Additional pictures:

Don't let her giggles and smiles fool you either. It's all fun and games when you steal your brother's whoopie pie!

Call America's Most Wanted Babies if you see this Whoopie Pie thief!!

I'm back

I've been on hiatus
Husband and kids with icky sickness that lasted for 3 days and then went on to the next one. The only two that had it at the same time were Sam and Keira. Kailyn's turn was scary because it was her first time throwing up since Type 1 Diabetes.  Illnesses like this can easily lead to hospital trips. Thankfully the Diabetes Center worked with us all day until she was in the clear. The Zofran did not work so it was a pretty powerful virus.
I thought I was in the clear, but then I got it 2 weeks ago and yesterday was the first day that I felt semi normal again.  No energy what so ever a night in the ER and a potential Blood Clot because of dehydration and laying around too much. I may be on blood thinners for the rest of my life. I will find out when Maine Med gets their act together.
Today is Super Bowl Sunday. No big plans.  I was a plumber today. I fixed the toilet lever and the bathtub faucet in the upstairs bathroom. It only took two trips to the hardware store. Yesterday I did our taxes. It feels good to be productive again.

Tuesday, January 18, 2011

Glasses and Strawberries

Kailyn got out to get her new reading glasses today. She was really nervous and still is. I have never had glasses so I am not sure what the nerves are about? 
I think she looks cute.
 Keira sucking on a strawberry. Trying to hydrate her

Saturday, January 15, 2011

Just because she is so darn cute.

I happened to run into a pair of new, returned, double runner ice skates at Target before Christmas. They were size 10 and $5.23 on clearance.  I want both my niece and nephew to learn to love to skate like my kids are. I called Nanie to see if I should make the purchase and she confirmed that Kyleigh was a 10 and go ahead. This was at 10pm, well past my sisters bedtime. We have an outside rink about a mile from us. It is a fun and free activity in Maine. Today was Kyleigh's first day at it and she did great. She seemed to have fun. She really wanted to wear a pretty ice skating dress and do twirls and tricks, but begrudgingly put on the get up that Aunt Didi put her in.(She would have ferociously protested with her Mom) She had been over to play before we went and got some clothing wet. She happily hopped in the car and the rest is history. Kyleigh is now an ice skater :)

Skating into her mother's arms like a princess
 Working on it.
 The Ice Skating Gang- Minus Nancy Kerrigan (aka Kelly)

Next Up! Graham!! :)

Something I thought I might never see.

Three years and four months ago Sam was diagnosed with Moderate Autism. He could barely talk, play or socialize. He also threw tantrums about routines and small things, lined things up and had stims.  We knew there was hope, but did not know if he would respond to ABA therapy. Thoughts of him living with us plagued our minds back then. He still throws the tantrums for us and is on the high end of the spectrum, but is thriving in school.  Tonight I put him in his room because of poor behavior and had to sit by the door to make sure he did not come out. He is beyond tired lately and routine changes are not helping. He kept pushing out these notes. One he tried to sound out "I am sorry", but this one just melted my heart. (SamLooMomm) "Sam Love Momma".  This is his very first sentence. It may be one long one, but he did it. This was the only area on his report card that he did not meet the standard at all. Now I need to send this to his teacher and his reading teacher so they grade him accordingly ;)

Sunday, January 9, 2011

Ear Piercing: Take two

Kailyn got her ears pierced for the second time today. She did it before, but took them out 7 months after to put a different pair in and that pair infected one of her ears. They said for sensitive ears too!! That ear closed up. She apparently has sensitive ears and I told her she can take the new ones out when she is ten. She did not have any problems until she took them out. 

It was a big treat this time though because her and her cousin Kyleigh schemed together to get it done. My sister did not think Kyleigh would do it, but both girls got it done with barely flinching.  The ear piercing lady really had it easy this time.  We have gone in to kids screaming bloody murder. Keira will get them when she asks for them too, but since she can't talk, nor cares for earrings (unless she can pull them off of other people) that will be a while. Kailyn got them when she was 6, Kyleigh will be 5 in May. Kailyn is so much older now compared to then. Here are pictures of them. You are not allowed to take pictures while they are getting them done. They both got April, which is a (fake) diamond.

Kailyn went first.

All done. Pro.

So Excited!

So Adorable.

Ice skating 2011 Fun Fun Fun

Sam is a wild man. He tries to go as fast as he can, but can't stop. So he falls to stop or crashes into snowbanks. Kailyn has come a long way too.  Very confident on the ice. She falls, but brushes it off and gets up again. Seth, really needs his skates sharpened and so do I. My feet were frozen by the end of two hours so I need to do something about that too.  They LOVE it though. I mean really really love it. Just like I did when I was a kid, but I had a pond in my backyard. No need to drive and parents were no where to be seen. Grammie is setting them up with hockey sticks and we have two pucks. Sam watches the big boys intently and you can tell he longs to get in on the pick up hockey games. (You need to learn how to stop first Sam) His friend Patrick joined us.  Seth and the kids tried the day before and were unsuccessful. I did not go with them. Kailyn fell to a Blood Glucose level of 46 and while Seth was tending to her Sam fell and then wet himself. Saturday was a MUCH more successful day. The baby stayed with her grandparents safe and warm in their house until we got back. Seth did have to do a run to go and feed her via the G-tube so the kids could stay longer.

See, she is happy. She claimed she would not smile.

Sam smiling while Dad skates the other way

Wild Man

Not smiling because she claims to be too cool.

Monday, January 3, 2011

Keira does not like to eat yogurt

BUT, she had a blast playing with it at lunch time today. Rubbing it in her hair, on the high chair etc..  We are giving her food at each meal to "play with" in hopes that some lands in her stomach. The first step in trying to wean a child off of a G-Tube is to let them see how fun food is. (At least this is what the Feeding team and Speech Therapist say) I can't decide if I should wash her hair every time she eats or only when we leave the house? She flattened it down pretty well with the yogurt today. Had a bath 3 hours earlier.  It has been over a month since we have seen a seizure, except for when she had a fever of 103.9.  She is also medication free. She had an Upper GI and they gave the go ahead to start the feeding process. We were told it is going to take a long time to get her off the tube, but it was well worth it to get her back to a healthy 14 month old. She continues to learn new things every day. Language is her strength. Eating and lower body physical movement, not so much. We have everyone we can working on it though. Two speech therapists and a feeding team.
Here she is after playing with yogurt and flattening her big head of hair down. If you listen closely you can hear her saying all done at the end.

Sunday, January 2, 2011

Keira's words (First post of the new year)

ah doh (all done)
it da (what's that)
grrr (growling at the dog)
ider (spider)
ruff ruff (dog)
clicks her mouth to gain attention
Mmm mmm  (vroom vroom)

She also shakes her hand "no no", tries to imitate the movements of itsy bitsy spider, gives the best kisses on demand, claps yay and tries to dance when we are playing the wii while sitting. :) (among other things I have probably forgotten) ;)